Achalasia

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Hi. I am a 46 yr old. I had a helleirs myotomy and funden nisopllication when i was 12 yrs old. Ever since the op i have had trouble getting most food to pass into my stomach without the aid of a drink. Things started to get worse in the last few years so i went to my G.P. He referred me to a specialist who gave me botox injections but this didn't help. Last year i went back and had a small ballooon dalitation (there are 3 sizes) which also didn't work. I went back again and had a medium balloon dalitation and that didn't work either. My consultant said the only treatment left is the large balloon dalitation but strongly advised against me having that as it has high risk of death or long term stay in intensive care (he told me the last time he did this procedure the patient ended up in intensive care for 3 months and almost died). He referred me for a second opinion but that consultant couldn't offer any other options either just told me to go back if i suffer significant weight loss. My original consultant has arranged for me to have an edoscopy once every 2yrs for the rest of my life to check for cancer.

My consultant was honest to inform me that my future didn't look very hopeful and i wondered if anyone else knew of someone who had had the same procedures of me that then later died and how long they lived for. I know it's diffferent for some people than others but i am just curious.

Ever since the op i had my lungs get sore if i run very short distances and feel cold but none of the doctors have an explanation for this.

Does anyone know about these symptoms and why i have them? 

Thanks.

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  • Posted

    Hi there.  I had the Heller Myotomy & a Fundoplication, and three months later, a balloon dilation.  Anything, foodwise, that goes into my mouth, has to be washed down with copious amounts of water.  I have type 1, Achalasia, which means my esophagus is paralyzed.  Finished.. no movement, hence the need for liquids everytime I eat.  I was told that some people who have the Fundoplication [and there are different kinds of these], have the diaphram involved, so you might want to explore if your diaphram was involved.

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    • Posted

      Hi Donna. I have never been told there are type 1 achalasia so i have no idea what type number i am. Thanks for sharing your story and replying to me.
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    • Posted

      Thank you.  Ask your surgeon/specialist/GP what 'type' Achalasia you have.   There is a patient's guidebook, that can be accessed online.  If you don't have this, perhaps 'Alan,' from OPA, can direct you to it.  There is some really good information in there about Achalasia, and the 'types.'

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    • Posted

      Hi Donna. I kept forgetting to contact my consultant to find out what "type" i have but finally have the answer now. 

      Apparently, i don't have type 1, 2, or 3 and my consultant has said this is because my condition is far more complicated than that. He is going to discuss this next time he sees me which i didn't think was for another year or so but his secretary seems to think it will be at the end of this year.

       

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    • Posted

      That is very interesting, considering there are only 3 types of Achalasia, as far as I know.  I would push to see if you can have that consult with your Consultant sooner than the end of the year.
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    • Posted

      Thanks for reply Donna. I'm going to wait because i am no better or worse than the last time i saw him.

      He did appear very concerned about me when the procedures didn't work, especially when the tests seemed to show no problem.

      i'll keep you tuned....

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    • Posted

      Make sure you keep the next appointment you get from the Consultant's office.  Best wishes.

       

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    • Posted

      Appointment has come through already and it is a soon as the end of September which is a surprise to me. Wonder if it's to arrange an endoscopy?

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    • Posted

      Saw my consultant yesterday. Once again he said i do not have type 1, 2, or 3 as my achalasia is more complicated than that. He didn't elaborate and i forgot to get him to do so because he went muttering on about my notes on the computer. He's a bit awkward to communicate with to be honest. He did say that having achalasia at 12 years of age was very rare and that it is more commonly found in adults. He told me i have Osteopenia as a result of the age i was diagnosed and also down to losing so much weight at the time. He has prescribed me something to try to prevent it from developing into Oesteoporosis so i will go to the pharmacy tomorrow to get it.

      He said i would of had achalasia before i actually had it and by that he meant that my body had been developing the illness over a period of time (maybe years). I asked him if he meant i was born with it and he didn't know. He said very little is known about the causes of the illness so it is difficult to give answers.

      I go back to see him in a year's time and will have more tests in 2 years.

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  • Posted

    Hi,

    You are in the right place for advice and I am sure much will follow re Medical Treatment options. However, in the interim it might make sense to mitigate the risks ( if you are not already) of acid damage as much as possible. Either from your stomach (if you get that) or from foods that linger. Obvious stuff like regular sips of antiacid and cutting back on acid foods (tomatoes pastes etc) and drink ( orange juice etc, fizzy drinks, and Acidic wines). I have not had surgery for A (at the mo) but my doc advised the above. Seems really obvious, but the penny did not drop until I was told- odd but...

    Best of luck and wishing you healthy karma,

    Neil

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    • Posted

      Hi Neil, i drink lots of water with my food but as my stomach is small the liquid fills me up easily which means i cannot eat large meals and therefore do not put on much if any weight.

      Thank you very much for your message.

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    • Posted

      Yup,

      I drink mainly water too. Trying to keep the ph balance as neutral as possible. I just noticed you are in the UK. I met with an Achslaia meet-up group last weekend in London which was very useful. The group has produced an excellent guide called a Patients Guide to Achalasia. If you google said doc but add OPA to the search you should find their guide and meeting details etc... Apologies if you have had this advice already! Its a long threadsmile

      Hope you have a peacful weekend and the sun makes an appearance!smile

      Healthy karma,

      N

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    • Posted

      Fizzy drinks fill me up. I was told to drink milk shakes with ice cream in them which i have found very helfpul once a day.

      I had googled support groups and saw the one in London but it is too far away for me to travel. I saw a list of support group but there were none within travelling distance at all.

      That's interesting to know the group has produced a guide.

      Thanks for replying again. We had sunshine all day yesterday but then had thunder and lightning!

      Best wishes to you.

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